Six ways data is advancing our understanding of eye diseases

Databanks and biobanks can empower scientists to test hypotheses using anonymised health information about a population or populations. Here are six examples of where databanks are helping to advance research with support from our funding.

1. Twins UK Cohort: Seeing double

Twins UK is the UK’s largest twin registry and “the most clinically detailed in the world”. The registry has over 15,000 identical and non-identical twins from across the UK, aged between 18  and 100. It enables scientists to research health and ageing longitudinally and has over 700,000 biological samples stored and data collected on twins with repeat measures at multiple time points.

The role of mitochondria in glaucoma

Researchers we are or have funded use the TwinsUK registry to advance their knowledge of eye conditions. For example, together with the Royal College of Ophthalmologists, we’re co-funding Dr Abdus Samad Ansari of King’s College, London, to explore the role of mitochondria in the eye and how they may impact someone’s susceptibility to developing glaucoma.

Mitochondria are the ‘powerhouse of cells,’ giving them energy. Changes in the number or function that occur with ageing are connected with several age-related diseases, including glaucoma. Using the Twins UK cohort and funded by our early career award.

Dr Ansari will be among the first to examine mitochondrial dysfunction in a healthy population over time. He will study identical and non-identical healthy twin pairs and test how mitochondrial function is related to age-related changes in the body.

2. Glaucoma Biobank

A ‘biobank’ is where bodily fluid or tissue samples are collected for research to improve our understanding of health and disease. It may refer to a collection of data.

Fight for Sight and Glaucoma UK funded Dr Anthony Khawaja (pictured) to create the UK’s first large-scale glaucoma biobank to help personalise treatment for people with glaucoma and identify people most at risk of sight loss.

The biobank will link data from glaucoma patients at Moorfields Eye Hospital and a national genetics study (the National Institute for Health and Care Research BioResource).

The biobank, called the Moorfields Glaucoma BioResource, will be the first of its kind for glaucoma. It is a response to a previous study by Dr Khawaja, which identified over 100 genetic factors associated with intraocular pressure (IOP) and the risk of developing glaucoma.

The project is funded through the Fight for Sight Small Grant Award, which supported the establishment of the Moorfields Glaucoma BioResource, data collection processes, database and the first year of recruitment.

Find out more about the Glaucoma Biobank.

3. Twins UK Cohort: Going with the Gut

 Fight for Sight partnered with the Royal College of Ophthalmologists to fund a study into the role of the gut microbiome in age-related macular degeneration.

The research may help researchers better understand the disease and develop new treatments. The study will use macular optical coherence tomography (OCT) scans of twins to produce detailed, high-resolution images of the macula, which show changes in age-related macular degeneration.

Dr Zakariya Jarrar from King’s College will lead the research after being awarded the Fight for Sight John Lee Primer Fellowship in partnership with the Royal College of Ophthalmologists.

 4. Informing better service delivery

Long-term resource planning is crucial for the longevity of free healthcare across the UK, including eye health.

Alongside charitable partners and the public sector, we have helped fund the UK National Eye Health and Hearing Study (UKNEHS) to deliver high-quality data on hearing loss and eye health in the UK.

The aim is to measure undiagnosed ocular disease and/or hearing loss, barriers to care uptake, and to test the uptake and effectiveness of remote sensory measurement technologies. The resulting data will help plan future services and improve outcomes. The study will gather data from all four nations and measure 25,000 people. It has a focus on digital transformation and four key objectives:

• Effectiveness,
• Efficiency,
• Economy,
• Compliance

Anglia Ruskin University is developing the project, led by Chief Investigator Rupert Bourne, Professor of Ophthalmology at Anglia Ruskin University, Cambridge and Consultant Ophthalmic Surgeon at Cambridge University Hospital.

Other partners include The College of Optometrists, Vision UK, the Thomas Pocklington Trust, the Royal College of Ophthalmologists and several other partner organisations across the eye health and hearing sector.

5. RP Genome Project

Fight for Sight helped fund the RP Genome Project led by Retina UK. It is also called the UK Inherited Retinal Dystrophy Genome Project.

Co-ordinated by Professor Graeme Black at the University of Manchester, the project brings together the UK's four largest IRD research groups: the University of Leeds, London’s UCL Institute of Ophthalmology, Manchester Royal Eye Hospital and Oxford University Eye Hospital.

One of the project’s core aims is to develop a confidential database of patients with a known genetic cause to make it easier to recruit for clinical trials.

Find out more about them by listening to the podcast hosted by Retina UK and our Director of Research and Innovation, Dr Madina Kara.

6. Database of features of normal blood flow

Dr Adam Dubis from Moorfields Eye Hospital NHS Foundation Trust aims to study the normal way the blood vessel system is regulated, which will help identify any abnormal changes in vascular disease. Funded by a Small Grant from us, he will use cameras that can visualise the smallest capillaries, vessel walls and identification of individual cells moving through the vessel.

He will develop a database for typical eye blood flow features using this camera. The database will include information on the density and arrangement of blood vessels, maps of blood flow rate by vessel size and how quickly and magnitude of blood flow increase in response to visual stimulation.

The database will define a range of healthy blood flow which means that abnormal blood flow could be determined. This information could improve diagnostic markers, treatment targets, and patient management.

Useful information

• For information about specific eye conditions, please see our A to Z of eye conditions.
• Want to know more about the research we’re funding? You can use our online database of plain language summaries to find out more.
• Our Family Funds raise money around specific eye diseases.